- Joined
- Oct 17, 2010
- Messages
- 53
I was diagnosed with Crohn's 10 years ago. My story is a long one, and I have been deciding since last night whether to give you the long version or just the short one. So I guess I'll go for a medium length one LOL.
10 1/2 years ago my first born son was around 8 months old. My living situation was pretty bad, I lived with my abusive alcoholic boyfriend, the father of my boys. I started getting terribly sick. For months I had constant D, vomited everything I ate or drank, lost a lot of weight (Crohn's was the easiest post pregnancy diet ever), started fainting every time I stood, and finally developed a perianal fistula. My boyfriend had been refusing to pay for me to go a doctor for months and I finally convinced him to let me go. I was referred to a GI after the fistula opened back up following a "successful" surgery. After a colonoscopy my GI came back with my diagnosis. I was put on Pred and Azulfadine and started getting better, but no one told me that the Pred would interfere with my birth control pills. I got pregnant with my second child and had to go off all my meds. I was sick the entire time I was pregnant and was so worried my son wouldn't be healthy. I was incredibly relieved when he was born healthy! It was actually this experiance, among others, that gave me the strength to leave my bad situation.
For a little over year after my son was born I was still pretty sick. I had no health insurance so I could not seek help. But out of no where I just started getting better.
Then I was hospitalized for an abdominal abscess. I got better again, for about 3 years with occasional flares. I met a man who I fell madly in love with and we got married in 2006. He knew I had Crohn's but I don't think he really understood what it meant for quite some time. Later that year I was hospitalized again for an abscess. I never fully recovered from that one.
Since then I have gotten worse and worse.
Pred, asacol, Pentassa, Imuran, Cipro, Flagyl, Remicade. Nothing has helped. I had an emergency resection in May 2009. I had another resection in February of this year. A month later hospitalized with multiple abscesses in my abdomen, dehydration, and malnutrition. Another month later hospitalized for critically low potassium. Couple months later dehydration and pain from an incisional hernia. I may be facing yet another surgery to repair a fistula leading from my small bowel to my colon. I have become B-12, folic acid, vitamin D, iron, and potassium deficient. I am in constant pain, am now fecally incontinent and go ALL the time, having accidents 2 - 10 times a week. I am exhausted and weak. I can't eat with out pain, and vomit every day, usually 3 or more times a day.
My local GI has no idea what to do with me anymore. He referred me to a specialist in Indianapolis. It was incredibly dissapointing. They admitted me for 2 days of testing. I left with no real plan except see a surgeon for my perianal fistula that has been there for over 10 years, it is annoying but is not painful and has nothing to do with how I feel! Then I am suppossed to see a GI psychologist. Stop taking Remicade and go back in a couple months to see how I am doing. Oh, and Questran. Even though I told them I couldn't do the Questran or any kind of anti-diarrhea med. It may or not help with the D, but it always causes the pain to get 10 times worse and if it does help with the D, when it wears off I am in the bathroom for hours on end. It's like it just builds up and then BAM the flood waters come forth.
So now I am on Imuran only. I have been taking it for almost 2 years with no improvement. Monthly B-12 shots, potassium pills, vit. D supplements, and I have to try to drink 2 Ensure or Carnation Instant breakfasts a day and following a Low Residue diet.
Even after the years of sickness, surgeries, hospitalizations, I still have to try and convince people I am not being dramatic. It isn't in my head. I am not using this as an excuse to cover up bulimia or anorexia. I don't have Munchausen syndrome (my father-in-law recently accused me of this).
I am just so frustrated!
Anyway, thanks for reading, and sorry it turned out so long!
10 1/2 years ago my first born son was around 8 months old. My living situation was pretty bad, I lived with my abusive alcoholic boyfriend, the father of my boys. I started getting terribly sick. For months I had constant D, vomited everything I ate or drank, lost a lot of weight (Crohn's was the easiest post pregnancy diet ever), started fainting every time I stood, and finally developed a perianal fistula. My boyfriend had been refusing to pay for me to go a doctor for months and I finally convinced him to let me go. I was referred to a GI after the fistula opened back up following a "successful" surgery. After a colonoscopy my GI came back with my diagnosis. I was put on Pred and Azulfadine and started getting better, but no one told me that the Pred would interfere with my birth control pills. I got pregnant with my second child and had to go off all my meds. I was sick the entire time I was pregnant and was so worried my son wouldn't be healthy. I was incredibly relieved when he was born healthy! It was actually this experiance, among others, that gave me the strength to leave my bad situation.
For a little over year after my son was born I was still pretty sick. I had no health insurance so I could not seek help. But out of no where I just started getting better.
Then I was hospitalized for an abdominal abscess. I got better again, for about 3 years with occasional flares. I met a man who I fell madly in love with and we got married in 2006. He knew I had Crohn's but I don't think he really understood what it meant for quite some time. Later that year I was hospitalized again for an abscess. I never fully recovered from that one.
Since then I have gotten worse and worse.
Pred, asacol, Pentassa, Imuran, Cipro, Flagyl, Remicade. Nothing has helped. I had an emergency resection in May 2009. I had another resection in February of this year. A month later hospitalized with multiple abscesses in my abdomen, dehydration, and malnutrition. Another month later hospitalized for critically low potassium. Couple months later dehydration and pain from an incisional hernia. I may be facing yet another surgery to repair a fistula leading from my small bowel to my colon. I have become B-12, folic acid, vitamin D, iron, and potassium deficient. I am in constant pain, am now fecally incontinent and go ALL the time, having accidents 2 - 10 times a week. I am exhausted and weak. I can't eat with out pain, and vomit every day, usually 3 or more times a day.
My local GI has no idea what to do with me anymore. He referred me to a specialist in Indianapolis. It was incredibly dissapointing. They admitted me for 2 days of testing. I left with no real plan except see a surgeon for my perianal fistula that has been there for over 10 years, it is annoying but is not painful and has nothing to do with how I feel! Then I am suppossed to see a GI psychologist. Stop taking Remicade and go back in a couple months to see how I am doing. Oh, and Questran. Even though I told them I couldn't do the Questran or any kind of anti-diarrhea med. It may or not help with the D, but it always causes the pain to get 10 times worse and if it does help with the D, when it wears off I am in the bathroom for hours on end. It's like it just builds up and then BAM the flood waters come forth.
So now I am on Imuran only. I have been taking it for almost 2 years with no improvement. Monthly B-12 shots, potassium pills, vit. D supplements, and I have to try to drink 2 Ensure or Carnation Instant breakfasts a day and following a Low Residue diet.
Even after the years of sickness, surgeries, hospitalizations, I still have to try and convince people I am not being dramatic. It isn't in my head. I am not using this as an excuse to cover up bulimia or anorexia. I don't have Munchausen syndrome (my father-in-law recently accused me of this).
I am just so frustrated!
Anyway, thanks for reading, and sorry it turned out so long!
